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The UKFibromyalgia Forums • View topic - D-Ribose Anyone?



D-Ribose Anyone?

Any tips on what helps you including alternative medicine.

Moderators: perseus, *Lisa*, FluppyPuffy

D-Ribose Anyone?

Postby Mr.A » Mon Aug 24, 2009 9:43 pm

I'm tempted to try this supplement. It sounds like a scam but I'm kinda running out of options and my symptoms are only getting worse and worse.

The idea is that it's a molecule that our muscles need for energy (ATP) and that CFS/Fibro suffereers are depleted of this molecule (Look it up on Wikipedia for a more technical explanation).

The main pusher of this supplement is Dr. Jacob Teitelbaum who is selling this product on his websites (I think he promotes it in his book too). I did a search for studies showing it's use in fibro, only a few came up, one of which was conducted by... Dr. Jacob Teitelbaum.

So has anyone tried this?
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Re: D-Ribose Anyone?

Postby miajane » Tue Aug 25, 2009 2:04 am

Hi Mr A,
I'd be really wary of someone selling the drug they are researching. I looked it up on wiki but saw the tests they did had no control group and were inconclusive anyway. Also, as I'm sure you know, wiki is not a reliable research tool as it can be edited by anyone.
I did find this site
http://www.thehealthierlife.co.uk/natur ... 00198.html
This suggests you would be on it for life and there are no studies on the lasting effects of taking it for long periods. Though they do seem to think it's another miracle cure.
But I'd still be wary and check with your GP before trying. D-Ribose is pure sugar that is made naturally in all living cells if we, as fibromites, are having trouble producing this or using what is produced would a synthetic version actually make any difference?
Another interesting site on the causes and treatment of fibro here:
http://www.supernutrient.com/fibromyalgia/
If you can read through it, it's quite long. I haven't yet looked into the demons more fully as I've not been well for a few days. I did find the spine damage interesting as I crushed a disc in my lower back years ago. I think quite a few FM sufferers have back trouble.
If you do try it let me know how you get on.
Sorry for the long post :D
Take care
Mia xx
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Re: D-Ribose Anyone?

Postby motherelephant » Tue Aug 25, 2009 8:27 am

I read a book about this stuff,the thing is you have to go through so much before you start to take it.There are loads of things that you have to eliminate from your diet ,from your home ,from your personal cosmetics the list is endless and some of the things you have to avoid you would never have known.aloe vera is one of the things salicytataes another.The book says unless you do this first the Ribose willl not work.I gave up it was taking too much energy ,goodluck.Motherelle.x
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Re: D-Ribose Anyone?

Postby shazq » Wed Aug 26, 2009 11:36 am

If you do go ahead to try it, plz keep us updated. :wave:
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Re: D-Ribose Anyone?

Postby Susieq » Wed Aug 26, 2009 11:59 pm

I was at a conference in Glasgow last year and it was Dr Teitelbaum and Dr Tom Gilhoolie.

I bought Corvalen R which is Dribose with malate added. It is expensive and I found it did give me an energy boost. However, after 2 weeks + of taking it, my stomach burned so I stopped it.

It tastes a bit syrupy or candy floss flavour but not disgusting to the palate. What works for some may not for others, if you can afford it try it. The tub I bought was £32...too expensive and it only lasts a month...not good.

:(
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Re: D-Ribose Anyone?

Postby LinzWorld » Thu Aug 27, 2009 3:27 pm

Even Dr T would never push this as the only treatment you use. It's not a major treatment, just something that can help people get on with their lives a bit better. And that's what he told me himself!

Treating Fibro usually requires a multi-disciplinary approach and in the UK this can be hard to access and will almost always require some private treatments, whether to see a good consultant or try new meds or to get physio/hydro/MFR or to get supplements you need. It is possible, but it's hard work to sort it all out.
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Re: D-Ribose Anyone?

Postby Paul Johnstone » Fri Oct 08, 2010 4:57 pm

I had CFS for 3yrs and went through a nightmare with aching joints, mood swings etc, living death basically plus no one believed me. We all get tired I got told at the doctors! 3yrs later I had a blood test done on my Mitochondria which showed they lacked a few things including magnesium. I took this to my doctor who said and I quote ' What do you want me to do about it' After some research on Doctor Myhill'S website site I saw she was prescribing D'ribose 3 x 5grms per day and I took the plunge and got some.

Now I had been on a stone age diet where I cut out dairy, wheat, sugar, yeast etc which had a helped a little say 5-10% my personal gut (excuse the pun) feeling is that once I got weak either thru mitochondral genetic factors or a virus that knocked my ATP functions out, I got attacked by everything including yeast. This led in turn to awful hangovers so that was the end of beer or any alcoholic drink. Anyway I digress.....after a month course of flucanazole to knock the yeast out, and 2 wks of the stone age diet I started taking D'ribose.

I was literally back to my normal self within 24 hrs and it was absolutely amazing. My girlfriend had only known me ill and we had decided to split up after 2yrs because I couldn't handle a relationship anymore. We are now back together! I was at the point of selling my business as my mental processing power was -10. Suddenly overnight my stamina and mental capacity increased 10 fold and I got my life back. My joints that had really ached had gone, my deep sleep returned.... I could go on. My sex drive came back, I could have a few beers and not get a hangover!!

All I know is I had a problem with my mitochondria and if you haven't had that checked out yet I would straightaway. I checked for D'ribose suppliers through the Dr Myhill and they got there's from Aviform. There is a website but you will find it I am sure and I don't want to break any rules. It is the cheapest supplier as well. I am sticking to the food intolerance diet for the time being but apart from that I am much much better.

Summing up I think there are many different causes of this awful disease but D'ribose seems to have been tested and shown to work in clinical studies on 50% of cases. They use it in heart failure in NHS hospitals, there are no side effects... apart from the pharmacutical companies have no patent on it. Hmmm now I don't like conspiracies but... anyway - Good luck!!
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Re: D-Ribose Anyone?

Postby shazq » Fri Oct 08, 2010 7:24 pm

Always check with your GP before trying anything as it could interfere with your meds. :hugs:
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Re: D-Ribose Anyone?

Postby Paul Johnstone » Fri Oct 08, 2010 9:45 pm

Good advice from Shaz and I totally agree. My doctor had never heard of it so it might be worth taking some paperwork about the make up of D'ribose so they can judge whether it would effect any meds you may be taking.

You can actually buy the capsules in Holland and Barrett now although it is an expensive way to buy it. Again just because it is sold there doesn't mean it wouldn't be harmful to you so do as Shaz said check with your GP. I bet they have never heard of it though!

Quick rant !!!!
I have to say I do think that due to all sides of the medical profession being stuck in their particular ideologies, sometimes I felt that neither alternative or traditional practicioners were open to anything outside of their own beliefs. Also there seems to be a massive industry conning people knowingly or unwittingly to part with money for a miracle cure. What a minefield to cross when you are already vulnerable through illness. Maybe alternative medicine will eventually be welcomed into the fold like independent record labels were in the 80s. I do feel as patients we deserve an unblinkered and holistic view from all fields of the medical community.
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Re: D-Ribose Anyone?

Postby denys » Fri Oct 08, 2010 9:50 pm

Totally agree Paul, but can't see it happening anytime soon (dont mean to sound negative) I think the whole medical profession could do with a big shakeup and some so called experts taught that they are dealing with intelligent human beings not idiots :evil: :evil:
Denys

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Re: D-Ribose Anyone?

Postby Paul Johnstone » Sat Oct 09, 2010 1:15 pm

Hi Denys,

Yes I agree they should treat people like intelligent human beings. Unfortunately even when you are well some doctors seem to be arrogant and condescending. I think it is a good idea if you have someone that understands your condition to take them along with you when you see your GP.

I went to sexual health clinics, urologists, every doctor in my surgery (about 7) and if they couldn't explain what was causing my symptoms (and they couldn't) they more or less said that I was either a hypochondriac or I had mental problems. Having had psychotherapy in the past I knew that the physical symptoms were causing the mental symptoms.

In the end I just felt I was stuck with CFS and would always have the condition so I tried to adjust my life accordingly. Where I had problems with people at work I told them in an assertive manner things had to change. I kind of missed out the therapist and went straight to the problem. I did have a lot of therapy in the past and wouldn't advise people to to jump in unless they felt able or had proper support. It took a lot of courage as I had been sexually abused and bullied when I was a child. However somehow I had to get through it and before the D'ribose had come along I had changed my life. I delegated tasks at home to my son and now he mows the lawn, cleans the kitchen etc This was great for him (and me) as he will make someone a better partner in the future. No more new's programmes in the morning, I listen to comedy or music. I was lucky as I found the missing link for my particular problem. All I can say is if you haven't had a test for your mitochondria and how your ATP etc is working get one done. If this is the problem then you know what I did, but do check with your GP first! Best wishes, Paul
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Re: D-Ribose Anyone?

Postby Paul Johnstone » Thu Nov 11, 2010 6:44 pm

Hi Everyone,

Just a quick note to say that D Ribose is still working for me. I have been referred to the John Radcliffe and talking to the consultant he said they are doing clinical trials at the moment in London so we should have some news in about 10 years lol. I think they are sceptical of the effect it had on me and I am being sent down the graded exercise/therapy route. I know D Ribose works for me, but it is as hard to convince health professionals that it is not a placebo effect at work as it was to convince them that I had CFS/ME in the first place. I must have done something bad in my past life lol

Best wishes
Paul
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Re: D-Ribose Anyone?

Postby denys » Fri Nov 12, 2010 4:05 am

Hi Paul, glad to hear that it's still working for you regardless of what the medical profession say, we are the ones who know how bad our pain and fatigue is :facepalm: :facepalm: :hugs:
Denys

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